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IN her book, Tell me the truth: conversations with my patients about life and death, Melbourne oncologist Dr Ranjana Srivastava writes about a patient with advanced gastric cancer.
“I want you to tell me how I will die”, the survivor of the Bosnian war said to her. “I have asked a few doctors but no one wants to.”
The patient told her that a young doctor nearly jumped out of her skin in fright at the question, while a surgeon gave him “a funny look” and said he would “send someone in”.
Dr Srivastava was surprised by her own reluctance. “I feel uncomfortable that I, who cannot help him live, am readily entertaining his death”, she writes.
She describes how she kept one eye on the door as they talked, “as if to avoid getting caught discussing death when my duty is to save lives”.
Doctors’ discomfort with such conversations may stem partly from a perceived lack of expertise, she suggests, but also from a difficulty with “the notion of not being in control”.
Whatever the reasons, there is evidence doctors do not always provide the straightforward information about prognosis that seriously ill patients might want, and not just in relation to cancer.
A study published online last week by JAMA Internal Medicine involving patients with end-stage renal disease found a striking discordance between patients’ understanding of their situation and the views of their nephrologists.
More than 80% of the 62 patients interviewed believed they had at least a 90% chance of being alive in a year. Only 25% of their nephrologists believed the same thing.
On top of that, more than a third of patients whose doctors said they were not transplant candidates believed they were.
The researchers, from Beth Israel Deaconess Medical Center in Boston, were particularly concerned that in 60% of cases the patients’ nephrologists indicated they “would not provide any estimate of prognosis even if their patient insisted”.
This is a small study conducted in a very particular group, although the authors say similar discrepancies between patient and doctor estimates of survival rates have been found in cancer studies.
If patients do have unrealistic expectations about prognosis, might this affect decisions they make about treatment, perhaps encouraging them to opt for more interventionist care rather than a palliative approach that could give them a better quality of life in their last days or months?
The Boston study, for example, found patients were far more likely to opt for care focused primarily on relieving pain and discomfort if they believed their chance of survival to 1 year was less than 90%.
In fact, the researchers express concern that the lack of clarity on prognosis could mean “hemodialysis patients generally may receive more aggressive care at the end of life than they desire”.
There are resources in this area (such as guidelines published in the MJA), but frank discussions of prognosis are probably always going to be challenging, not least because it may not always be easy to work out how much an individual patient wants to know.
For Dr Srivastava it was cathartic to see the peace her patient reached after their conversation: “There won’t be even one more question”, he said with a weak smile. “This conversation has taken it out of me, but I feel it has been the most meaningful.”
He died that night.
“I am surprised at how unnerving I find the concept that, even in this age, medicine cannot always deliver wonders, yet what I found hardest of all was casting aside my own reluctance to discuss the details of his dying”, Dr Srivastava writes.
“How ironic that we, witnesses to life in all its glory and ruin, have yet to come full circle and talk easily about death.”
Jane McCredie is a Sydney-based science and medicine writer.
Death is to me more of a taboo topic in industrialised societies. After all we all die. Nothing is certain except death and taxes !!
On the same but a slighly different aspect myself with two of my colleagues edited a multi author book called “Making Sense of Near Death Experiences: a handbook for clinicians” I hope this contribution will add to the discussion on the topic of mortality and help clinicians when faced with questions about death.
I think what I want to add to the conversation is Advance Healthcare Planning starts at any age.
Having truthfull discussions about what you choose to happen if you couldn’t speak for yourself is the practical side of it. But pretty soon death is out of the closet and truthful discussion can begin.
It’s a very life liberating process I find. It is a part of the service I would like to offer.
In the bigger picture its about supporting a healthy, cultural change – a shift from dying as a medically centred, institutionalised model to something more natural. In fact like birth, with some preplanning, choice and heart.
Clinicians need to be more aware that having the legal choice for a medically assisted death puts the dying patient back in control. Apparently it also removes the toxic fear of dying and often has a palliative effect in its own right.
In many cases a patient who requests and is accepted for an assisted death lives longer, and has a better end quality of life than those who do not request assistance.
In Oregon, one third of those who are prescribed the fatal medication do not go on to ingest it, but it does provide peace of mind.
The procedure involved in requesting assistance makes an in-depth discussion about dying, treatment options, or the lack of options, mandatory.
While it is not scientific, at two meetings discussing VE recently I posed the question, “If you were dying and had two choices – (1) palliative or terminal sedation, where you are put into a coma and die slowly from starvation or dehydration, taking perhaps 10 days, or (2) having the same 10 days medication, but administered in a single dose, and you die within minutes.” Not one person put up their hand as preferring option 1. As far as I could ascertain, every person put up their hand preferring option 2! PC clinicians please take note!
Such a pity that Voluntary Euthanasia and Physician Assissted Death are not yet legalised leaving doctors inhibited from helping patients manage their remaining days of life to the best advantage of all (patients and their loved ones). How long before we can give patients and doctors permission to plan for terminal life and death? Is it not really only bigotry and cowardice pthat prevents this step to a more civilised society and a more comprehensive medical profession?
I have read and agree that we live in a death denying society. We deny that death comes for us all at least at an emotional level. Medicine is the pinnacle of Western societies death denying culture, and subsequently when death is occurring for a patient, as it does for us all we are ill equipped to deal with it. A lossof belief in anything beyond the physical has stripped us of any coping mechanisms for death but denial.
I suppose one consolation is that usually the dying process is only a small fraction of a persons life and we have been making great improvements in caring for people throughout the rest of their life. I still think that we atleast need to bite the bullet and tell it how it is though, if the patient then chooses to deny death then that is their choice. It is an incredible disservice that we do to people by giving them unrealistic expectations because they may choose to use the time they have quite differently.
In anatomical Pathology we see this most commonly with the enthusiasm of oncologist who seem ecstatic about treatments that have horribly side efffects and when you actually read the literature properly often extend someones life from say 6 months to 7 months so one more month on average. Although non clinical now I find it hard to believe that many patients would opt for these treatments if we were being 100% candid with them about the efficacy.
We just can’t help ourselves focusing on pumping weed killer into peoples veins when the horse has long bolted, bringing the patients focus to fighting death to the last gasp when perhaps they could find peace and acceptance if we didn’t make it all about the fight, the denial of death.
Perhaps I have been fortunate with the clinicians who have treated me and my prostate cancer. Maybe because of my training in a para-medical field, they have appreciated that I have some knowledge, and so are somewhat more willing to discuss the issue. From a patient point of view I feel it is necessary to understand that the clinician cannot tell you precisely – there are a wide range of survivals. I certainly do NOT intend to hold them to their “best estimate”. With good information, patients can be both realistic AND hold on to some “hope” that they may be on the high end of the survival curve.
The recent Whitlam documentary on television puts it well. Whitlam was asked if he ever lied when asked a question. He said ‘Yes’, and qualified it, that it was only when it would have caused more damage by telling the truth.
A doctor (now retired) and I were discussing the enormity of words told to a patient. He had a wife tell him that if her husbands diagnosis came back to tell him that he had cancer, please do not tell him. He will not be able to cope. It did come back to say that he had terminal stomach cancer. Heeding the wifes advice, he simply told the patient that he had a bit of a stomach problem, gave him some viatamin tables and said; ‘these should help you’.
When the patient came for a subsequent check up, the cancer had gone.
So the quation here is – words are very powerful – do you want to give hope or give a death sentance? Choose your words carefully.
“Talk of Death” underlines once again the importance of introducing and quite possibly demanding of PCEHR holders to partake in an Advanced Care Plan once a certain age is reached. People refuse to accept their inevitable dying and most medical professionals need to be taught how to cover the topic early in their career training. The need to discuss one’s last sixty days well beforehand is significant for our personal wellbeing as well as for that of the Federal Budget for Health and Ageing. We cannot afford to spend eighty percent of our individual total health costs on our last sixty days. The Nation certainly cannot.
Could this be because we are too ‘busy’ to sit down, share and empathize ? Would it be different we chose to adopt the “Let Patients Help’ movement by Dave deBronkart ? Wo’uld we be less judgmental about ‘eople clutching on straws and maybe share their journey as equals who empathize ?
None of this is unexpected or surprising. It is how humans behave. It is called hope. If you fall off a cliff and as you fall you pass a small branch of a tree you will instictively try to grab it even though you know: you probablty can’t grasp it, it won’t hold your weight anyway, you won’t be able to hang on to it even if you do grab it, and, that trying to is most likely futile. You just don’t rationally percieve of the alternative. We see this with proceduralists who keep making the same efforts with treatments they know make little difference but appear to satisfy everyone that they are doing their best. The more things change the more they stay the same!
the trouble is that too often many patients and their relatives have not taken a grasp of the fact that their cancer, or dementia or advanced emphysema, will kill them sooner or later and the Oncologist or other specialists too seldom have this discussion with them. So we often have patients brought to Emergency without this understanding, their relatives wanting full resuscitation etc, and Emergency doctors having to make the discussions about death with patients & relatives that we’ve never seen before. Please !
After thorough staging and histologic grading of my prostate cancer in 2008/9 the very
experienced and highly regarded Urologist offered his prognosis of 3 possibly 6 months
supported by a Sloane Kettering algorhythm.
Following further recent palliative RT I have managed to cease all analgesia.
It is obviuosly challenging to discuss a meaningful prognosis in all cases.